For World CML Day (September 22nd), Nancie Steinberg reflects on living with chronic myeloid leukemia and how a cancer diagnosis ultimately led her from patient to advocate.
Fourteen years ago, I heard three words that changed my life forever: chronic myeloid leukemia.
Like anyone hearing the word leukemia, my first reaction was utter fear and worry.
Cancer had already been part of my life in ways I never wanted it to be. I had lost my mother to metastatic breast cancer and was diagnosed with breast cancer a month after she passed. I knew all too well how quickly a diagnosis could change a family. But nothing prepares you for the moment when cancer becomes your diagnosis.
I remember trying to understand what CML was, what it meant for my future, and perhaps most importantly, whether I would live.
Scientific advances had transformed what was once a devastating diagnosis into a chronic condition for many patients. Targeted therapies had dramatically changed outcomes and made it possible for people like me to imagine futures that might once have seemed impossible.
And I am profoundly grateful for that science.
I am grateful for the researchers who spent years studying this disease. I am grateful for the physicians who care for patients like me. And I am grateful for the treatments that have allowed me to be here, fourteen years after my diagnosis, living a full life.
But I have also learned something important along the way:
There is no such thing as a “good cancer.”
Yes, CML can often be treated successfully. Yes, many people living with the disease can continue working, raising families, traveling and pursuing their dreams. I am one of those people.
But that doesn’t mean cancer disappears from your life.
Living with CML means living with the knowledge that cancer is always somewhere in the background. It means blood tests, doctor’s appointments, monitoring and waiting for results. It means taking medication and paying attention to your body. It means trying to live normally while knowing that something extraordinary and frightening is happening inside you at a cellular level.
For me, one of the most difficult parts of living with a chronic cancer has been the uncertainty.
Cancer is unpredictable. Even when things are going well and thankfully, they have for me—the reality of the diagnosis never completely leaves you. You learn how to live alongside it.
Fourteen years later, I have become very good at doing that.
I have worked. I have traveled. I have celebrated birthdays and milestones. I have raised my children and watched them become young men. I have built relationships and continued to pursue a career I love.
From the outside, life can look perfectly normal.
And for the most part, it is.
But cancer changes the way you see time.
You become acutely aware that life is not something to take for granted. You pay attention to moments that might once have seemed ordinary. A walk outside. Dinner with your family. A birthday. A vacation. Even an uneventful day can become something worth appreciating.
Living with CML has taught me gratitude, but it has also taught me that gratitude and fear can coexist.
You can be thankful for your life and still be afraid.
You can be doing well and still worry before a doctor’s appointment.
You can be living fully while still carrying the emotional weight of a cancer diagnosis.
Both things can be true.
From Patient to Advocate
Over time, my experience with cancer began to change me in ways I hadn’t expected.
At first, I was simply a patient trying to understand my own diagnosis.
But eventually, I began to ask more questions.
I wanted to understand the science. I wanted to know how treatments were developed. I wanted to understand clinical trials and why some research moves forward while other promising ideas do not. Most importantly, I wanted to understand where patients fit into the process. I also had worked with many patient advocates through the Healthcare PR and Media Relations work I do.
That curiosity eventually led me into patient advocacy.
Today, some of the most meaningful experiences of my life have come from sitting in rooms with researchers, clinicians, policymakers and other patients and realizing that patients have something essential to contribute and say.
We are not simply the recipients of research.
We are living with the diseases researchers are trying to understand.
We know what it means to manage treatment in real life. We understand the fears that don’t show up on a laboratory result. We know that the definition of success can look very different from the patient’s perspective.
Patients deserve a seat at the table, not as an afterthought, but as partners.
Recently, I had the privilege of participating in Project LEAD, the National Breast Cancer Coalition’s intensive science training program for advocates. It was one of the most intellectually challenging and inspiring experiences I have had.
We studied the biology of cancer, genetics, immunology, clinical trial design, translational research and emerging technologies.
For me, learning the science was empowering.
The more I learn, the more strongly I believe that informed patients and advocates can help make research better. We can ask difficult questions. We can challenge assumptions. And we can help ensure that scientific progress remains connected to the people whose lives it is meant to improve.
My journey from CML patient to advocate was not something I could have imagined fourteen years ago. It was my secret.
But cancer has a way of changing your perspective.
It forces you to reconsider what matters.
And sometimes, unexpectedly, it gives you a sense of purpose.
The Power of Progress and the Work Still Ahead
On World CML Day, September 22, I think about how extraordinary the progress in CML has been. Btw, September 22 is particularly meaningful because 9/22 symbolizes the chromosomal translocation between chromosomes 9 and 22 associated with CML.
The science behind targeted therapies has changed lives. It has changed my life.
I am here because of scientific research and discovery.
But I also think about the people who are newly diagnosed today.
I remember what it felt like to hear the word leukemia and immediately imagine the worst.
I want them to know that there is reason for hope.
I want them to know that they are not alone.
And I also want people to understand that living with a chronic cancer is more complicated than simply being told that your disease is “manageable.”
We need to continue listening to patients.
We need to continue investing in research.
We need to continue asking how we can make treatments not only effective, but tolerable and accessible.
And we need to remember that behind every scientific breakthrough is a person trying to live their life.
Fourteen years after my diagnosis, CML is part of my story, but it is not the whole story.
I am a mother. A wife. A communications professional. A patient advocate. A friend. A traveler. A lifelong learner. A two time breast cancer survivor.
I am also someone living with chronic myeloid leukemia.
For a long time, I thought survival meant simply staying alive.
Today, I see it differently.
Survival is also about learning how to live with uncertainty.
It is about finding community when you need it.
It is about allowing yourself to be afraid while continuing to move forward.
It is about gratitude not because cancer is a gift, but because life is.
And for me, it is about using my experience to help ensure that patients are heard, respected and included in the conversations that shape the future of cancer research.
Fourteen years ago, I was a patient trying to understand what CML would mean for my future.
Today, I still don’t have all the answers.
But I do know this:
I am here. I am living. And I intend to use my voice.
On World CML Day, that feels like something worth celebrating.
